This isn't a normal recipe/craft/etc post that I love to share on Sweet C's Designs- its a bit, um, personal. If you're not comfortable with basic medical terms and the names of female anatomy, this post really isn't going to be your jam. And if you're seeing this from an email subscription list- don't worry, this won't be a regular installment. I'm putting this out there in case there is someone else who has gone through what I'm going through right now and is comforted by the realization they aren't alone.
I've been suffering from Endometriosis since shortly after my periods began in high school.
If you're not familiar with endometriosis, it is a condition/disease where endometrial tissue grows outside of the uterus- causing mild to severe pelvic pain either during periods or sometimes nonstop. It can also invade non-reproductive organs like the stomach, bowel, colon, kidneys, liver, and even lungs!
Since Endometriosis is not easily diagnosed, and often confused with other reproductive issues, actual numbers of women affected is a bit unclear- but as many as 6-10 women out of 100 have endometriosis. Im not in any way a doctor, so check out the Endometriosis Association for more information if you're interested in more information.
Endometriosis is real, and if you're going through it, my heart goes out to you.
My Endometriosis Journey & Backstory
I've never talked about my endometriosis journey here, but let's just say it has been a long, painful and often hopeless trial. Endometriosis is not only painful (and sometimes life-altering), but a very isolating condition.
Many people have never heard of endometriosis- and plenty of doctors (shockingly) have very little knowledge of it.
I've had OBGYN's actually tell me they had painful periods too, and that I'd get over it. I've had OB's treat me like I was a drug seeker, or a hypochondriac.
I had doctors say seemingly random other health crises couldn't possibly connected, even though they happened during specific hormonal timelines.
Worst of all, I've had to explain the condition over and over to friends who have no idea what endometriosis is, and explain (mostly to justify to myself) why I'm not crazy, I am really sick- and I really do get sick all the time and have a ton of health issues and surgeries. It's hard when you're a "healthy" adult, but feel like you're in your 90's.
I have always suffered from some immune deficiency and a weak immune system- including bouts of colitis, cholecystitis (just had my gallbladder out in May), frequent rashes and hives, random infections, and flares of reactive arthritis.
While these are likely not caused by endo, they are certainly aggravated and worsened by it. Every time I suffer a flare up, I just so happen to be in a certain place in my monthly cycle. To say I am a slave to my hormones is an understatement!
I've tried every remedy my doctors and I could think of- hormonal birth control pills, depo provera, depo lupron, mirena, laparoscopies, the endometriosis diet, accupuncture, physical therapy, getting pregnant, metformin, clomid.... the list goes on.
Some worked for a while, some didn't work at all, and some worked well but came with side effects (weight gain in excess of 60 pounds on an already un-skinny frame) that worsened other health issues, like poly cystic ovarian syndrome and horrible arthritis.
In short.... I've been suffering from chronic pain, often times interfering with my daily life, for a long time. In the last two years, the pain has become unbearable. In addition to the twice monthly pain I had normally endured (during ovulation and periods), my inflammation levels have skyrocketed as my endometriosis has grown- and I now have chronic pelvic pain in addition to severe arthritis pain in my ankles, knees and other joints. While my arthritis is likely not connected to my endo (it could be, but who knows), the high level of inflammation in my body, caused by endometriosis, has certainly made it much worse.
I've recently started to be in pain all month long, no matter where I am in my cycle and simple things like- ahem- going to the bathroom can sometimes be torturous.
Not to be crass, but my uterus has basically become an evil, bitter bitch that I am sick of. She's no longer welcome to rule -and ruin- my life. And it's time for her to pack her bags and go.
For someone who had significant hormonal imbalances, I had a surprisingly easy time getting pregnant and delivered two perfectly healthy babies when my husband and I decided we were done having children.
We didn't want to go through another round of pre-eclampsia, and the constant arthritis and pelvic pain I've been having has made me weary to want another child.
My husband and I both come from a family with one other sibling, so having two children was kind of our ideas in the first place- but I've put off getting a hysterectomy in part so I could be one hundred and fifty percent sure, and also because having a long recovery-heavy surgery with very young children wasn't exactly ideal.
We're in a place now that with school, our parent's availability to help with the kids for up to four to six weeks, and our own job situations it seems like a better time. But choosing a hysterectomy is still insanely complicated. And intense.
Although there is a lot of information and support for women having hysterectomies (check out Hyster Sisters for more information than you'll ever care to know), there aren't a ton of people voicing what it is like for someone so far from menopause- and usually, women who undergo such a drastic surgery at this age are doing it to prevent the spread of cancer.
Since I am (as far as we know) cancer free, it's a fairly uncommon decision to go through a radical hysterectomy (where they take pretty much everything- uterus, ovaries, cervix).
I'm told many more women in their thirties and even twenties are having hysterectomies early- many who have suffered from endometriosis and poly cystic ovarian syndrome, like myself- but it's hard to not feel a bit alone when most of the people I've come across who have had this procedure are at least a decade older (which is not a big deal in the grand scheme of things- but hormonally, being 30 is so different than 40, 50 or 60).
Why I am Choosing Hysterectomy
I am tired of feeling like I am letting everyone down. As with anyone who goes through long bouts of pain, I feel like I am constantly letting people down. I don't do much with my friends. I miss tons of events because I just don't feel good. I don't follow through with plans, and avoid even making plans because it's easier to stay home. I know it doesn't help me in the long run, and that I feel better when I do get out, but it is such a process (especially when the fulltime caretaker for two kids) that I just chose to skip.
I don't want to stay in a vicious cycle of painkillers. I'm at the point that painkillers don't fully help the pain- they just improve it. I don't like taking painkillers, and i don't like feeling groggy and loopy. I have tried a few times to get into one of the new medical trials for a painkiller specific to endometriosis, but had to opt out once, and then another medication I am taking regularly would have contradicted participation.
I want to be more involved with my kids. Running around after them, skiing again (I havent been in years- and I used to go all the time!), going on fun outings more- I want to feel better and be able to make all the memories my kids deserve.
And most of all- I just. Want. To. Be. Out. Of. Pain.
Living with chronic, uncontrollable pain is no way to live. It's miserable, and I want so much more. I am hoping this surgery helps- and I know I might still face challenges and might have to do some further therapy to be fully healed- but I am ready to fight back.
Why I'm Completely Freaked Out
(This is a very raw, very rough stream of my actual hesitations and feelings at this point that I'm adding just because I haven't seen many people talk about their fears. Most of them I know are completely irrational and overly emotional... but I think it would help me feel less "alone" to read someone else who is having these struggles internally, even though they sound crazy.)
Kids. My husband and I have exactly zero desire to add additional children to our family. We love our two children who very much complete our sense of family.
However- there is a very real part of me, as small as it may be, that will always say "but are you REALLY done? You weren't really ready for kids- are you really done?". Which, yes, we are done. DONE. A hysterectomy just seems so much more final, as odd as that sounds- even though my husband already had a vasectomy. Not only will I be getting rid of the baby home- but all eggs as well. That's the part that freaks me out a bit.
As odd a concern as this is- what happens to the eggs? Do they just go in the trash? Of course they do, that is what makes sense. It just seems weird, and emotional, and.... complicated.
Part of me thinks I should freeze them if we ever wanted a surrogate in the future, but I don't see a scenario in which we would and that's a silly extravagance when you know in your heart you don't want another child. And if for some reason I really did want another child, I'd love to adopt and give a loving home to a child in need. It's just impossible to drown the emotional attachment to my body's role as a mother, as a giver of life.
Complications. All surgeries have a risk of complication- especially major surgeries. I have chosen to have robotic surgery (my OB is the head of the Da Vinci robotic surgery department at his hospital), which significantly reduces risks- but no surgery is without risk. Since endometriosis can't be seen on an ultrasound or x-ray, it's impossible to know exactly what the doctors will find- and as my uterus and ovaries look to be adhered together, there might be other issues with additional complications.
It isn't outside the realm of possibility that my uterus and colon or bowel could be adhered as well- which brings about whole other sets of concerns. Since it is unknown, I am trying to not think of the "what ifs", but it's hard to not let my mind wander. Have you ever watched an injury lawyer commercial? I feel like the one asking for class action claims for robotic surgery are always on when I watch tv. Thanks lawyers, you aren't helping.
Hormones. Often, when women have hysterectomies, they are close to or past menopause. I'm a good 20 years (or more) from menopause- and statistically, early hysterectomies mean earlier death. Hormone replacement does help this, but older methods of hormone replacement also carried a significant increase in heart attack.
I have already started bio identical pellet hormone replacement- which does not carry the same heart risks- but it is hard to look at the numbers of women who die early without estrogen. I plan to remain vigilant and stay on hormone replacement therapies, but it is hard to think I am not being selfish in wanting this when I could possibly be cheating my kids out of a long life with me.
On a less serious note- MENOPAUSE. I'll be in menopause almost immediately after surgery. Since menopause is so wonderful and amazing, it sounds like nothing but a blast, right?
I've stocked up on chillows and cooling pads- and am thankful I chose surgery in winter so I can crack open the windows when I need. But really- I'm not looking forward to this:
I know it will be okay- and I trust my doctor and the hormone therapy I have chosen- but it's just hard to feel at peace with anything but my own hormones. We did talk about saving the ovaries- but with aggressive pain ruled by hormones, it isnt a great choice for me.
I'd likely go through the surgery and still be in pain- so we're going to have a delicate balance of having enough estrogen to protect my heart and bones- but little enough to not bring on more pain.
For all that is awesome about being a woman, sometimes having a uterus just plain sucks.
In the end, my husband (who has been phenomenal, especially in the last few months helping me with things I haven't been able to do, supporting me through emotional over-reactions, and keeping a level head) and I decided that we think this surgery will be the best choice we could make for me- and for our family. It hasn't been easy- but I am hopeful it works!
If you've had a hysterectomy, I'd love to hear from you (maybe save the scary stuff until next week?). If you're stuck in pain from endometriosis- find a doctor who will listen.
Although we feel it is the right step to take, my doctor didn't push me into this direction, and was ready to try other options. Finding a good doctor is more valuable than anything else- keep searching until you find one you trust. And if you have any specific questions, I'd love to hear them!
I might be slow responding to emails, fb and tweets for the next few weeks as I head in, and then recuperate- but I have lots of fun and delicious posts scheduled for the website.
Hello, I know this article was posted several years ago, but I just had to let you know it was great. I’m 33, and my hysterectomy was this past Wednesday. EVERYTHING you said is completely relatable, (except for skiing- never been, but would love to!) I have my follow up appointment tomorrow, and I’m assuming my doctor will be starting me on my hormone replacement. I am absolutely TERRIFIED thinking about how they’re going to effect me. I was so excited to get this surgery, so I could hopefully start a pain- free, normal life. Now I’m stressed at the thought of my body changing (mentally, chemically, and somewhat physically), for the worse. Anyhow, I wanted to ask how things have been for you since you’ve had your procedure? Just kinda looking for that reassurance that there is light light at the end of the tunnel?
I’m 32* 33 March lol
I'm here to say there 100% is a light at the end of the tunnel. Do I still have some messed up problems with my body? Yes - but LIFE IS SO MUCH BETTER! As for hormones - get a laser hair removal center on speed dial (trust me on this one, lol) and take nutrafol or some good hair vitamins, but otherwise, the hormones havent really done anything but make me feel good. I cant even remember what life was like before it - it is so so so much better now.
Thank you, I really needed this. Menopause has already hit me in full force and I feel like I am losing my mind! I have my follow up today and I’m hoping to get started with HRT. My pain isn’t any better and add all effects of menopause. I know it’s only been a week so I shouldn’t stress too much. Thank you for listening!
I was reading everyone's post and it made me feel better but I'm still scared and worried. Am I making the right decision I keep asking. I'm supposed to be getting a hysterectomy in Dec due to having sever endometriosis since I was 13. I have one ovary and two children. I do suffer with depression, so my question is how will this play apart of my depression? How do I choose, do I want to be in constant pain or do I want to deal with depression. I do take medication for my depression but being in constant pain I still have my bad days. Also, someone said I could have a heart attack and I don't want to risk the chance of dying,leaving my children and husband behind. I've done everything to try and get rid of my endo. I've been in pain management taking 4 10mg Percocet a day and it doesn't even phase me anymore. I feel alone.....
Oh Yvette, my heart is breaking for you.
First off, and most importantly - you are NOT alone! It is so scary and such a horrifying feeling, but so many women have been there as well, and I shared all the same fears you had.
I was in so much pain, I honestly couldn't imagine how I'd ever stay alive with endo. It has now been 3 years since my radical hysterectomy, and I can say that life has never, ever been better. That isn't without struggle - I've gained weight, and still have times of terrible pain (thanks to rheumatoid arthritis, I'm sure you've heard how women with endo often have other immune disorders) - but I feel like I have such a better quality of life - as well as my kids having a much better mom - now.
As far as the hormone/heart attack risk, ask your doctor about hormone pellet replacement. I'd also ask why they are keeping one ovary - my doctor said taking both was the only way to keep endo from coming back. The pellets have been lifesavers - they really make you feel alive again, and protect your heart and bones (estrogen and testosterone are very vital to women!!) I was really lucky to have a surgeon/ob who totally understands bio-identical hormone replacement - he's completely changed my life with them!
I know this is so scary, but I can honestly say I would chose to do it all over again, every single day. I don't look back for one second! If you need anyone to talk to, please email me at firstname.lastname@example.org 🙂 I'll be keeping you in my thoughts and prayers!!
Hi. I read your story and finally don't feel alone. It's a few years ago but I wanted to check in on how you were feeling. I have questions and concerns please let me know how I can get in touch with you. Thank you,
Hi Rita! You can contact me at email@example.com.
The long and short of it though - I am feeling great! I've had some hiccups here and there with hormones, but I don't ever second guess having the surgery, and only wish I had done it earlier so I could have enjoyed more of my kids infancies. I don't hesitate in saying it saved my life. There is so much more to life once you get out of the cycle of pain!
thanks for the post, I would like to ask you about how the sex life after hysterectomy a full hysterectomy with ovaries removed, I am getting my hysterectomy but keeping my cervix. I like to know the menopause shock after the surgery?
It's a bit funny to talk about publicly- but things with my husband and I are fine post-hysterectomy. Maybe even better since I'm not in so much pain all the time without rampant endometriosis??
I am getting bio-identical testosterone and estrogen pellets implanted once a quarter- that has been CRUCIAL in keeping energy up, joint health optimal, and interest in the bedroom. I'd say I had moderate menopause shock - I was already on the testosterone pellets, though at a smaller dosage, before the surgery. My doctors had me on a transdermal patch for estrogen which helped a bit, but we already knew I would be taking the pellets beforehand, so we didn't wait long to get me on it. It was a bit of a rough adjustment while we figured out the right dosing - but nothing as bad as I was picturing. I think some of that is because my RA symptoms were so overly aggravated by the endo inflammation I felt so much better, so maybe I didnt notice the shock as much as people who are otherwise healthy might.
All in all, there were some issues, especially for the first six months, but now my life is radically better. I would sign up for the surgery all over again in a heartbeat! I do still suffer from some abdominal swelling issues and post-menopausal weight stuff, but being able to walk, not being crippled by pain from periods two weeks out of the month are totally and completely worth it!
If you want more detailed info, you can always email me at firstname.lastname@example.org!
Thank you, thank you thank you. I have an appointment with a surgeon Wednesday and you have no idea how much your post helps me. I would love to hear about your post op. I think it would help calm me.
Jen- I need to write a full post, but it has been nothing short of amazing. There were ups and downs, but now almost 6 months out- I wouldn't turn back!! Feel free to email me with any questions. sweetcsdesigns @ gmail dot com